Wednesday, February 27, 2008

Need some quality reading to get you through the rest of the week? Check out February’s Pain-Blog carnival at How to Cope with Pain. During the last week of every month the best posts of that month are featured, and remember, new bloggers are always welcome to contribute!

While you’re at it, be sure to visit Science Roll for this week’s edition of Grand Rounds. This week’s theme is “The Future of Medicine”—see what’s in store!

Wednesday, February 20, 2008

Loolwa Khazzoom, writer and chronic pain patient, has started a really interesting new blog called Dancing with Pain. It's chock full of therapeutic ideas, insightful commentary, and, luckily for me, guest bloggers. She invited me to write for her site and the post is up here. Check it out, and stay awhile--she's got a lot to share!

Tuesday, February 19, 2008

I’ll start with the preface that I know I am fortunate to have health insurance. It isn’t the best insurance out there but it isn’t the worst and relatively speaking, I know I don’t have much right to complain.

But.

Obviously when we’re talking about health insurance you know there’s a “but,” right?

I’ve long since accepted that the glory days of my past insurance life are over, the days when my Daily Chest Physiotherapy was covered, you know, daily, and routine doctor visits didn’t cost hundreds of dollars. I use Express Pay for my many refills and pretend not to notice what the amount due actually is, figuring I’ll just deal with the full blast at tax time. I take what I can get.

Still, it’s impossible for me not to get fired up at the state of healthcare, at the exorbitant cost of heavily marketed blockbuster “me-too” drugs, at the futile feeling that preventative care is the most important thing we can be doing but is still not a priority to many. I will return to this line of thought in one moment, rest assured!

Recently, I had my own minor little indignation. I picked up my refills and a generic prescription for allergies/sinus congestion I’ve had since 1996 cost 10 times what it did last month. Now that was an Express Pay bill I couldn’t ignore! I made many phone calls to the insurance company and the prescription benefit people and actually ended up conferencing both parties since their knowledge of what the other was doing was so woefully inaccurate. I found out that as of January 1, the medication was no longer covered, despite the fact that we pay extra each month for “premium” prescription coverage and despite the fact that drug is listed on the company website as the “preferred drug.”

The real kicker? No other drug in that whole family is now covered. At all. Huh? Now, I realize that of all my meds it’s the least serious one. It’s not like they took away my thyroid medicine or my heavy duty antibiotics or my refined nebulizer medications. The world won’t end. But, as I said to the woman on the phone, it doesn’t make much sense. Keeping my sinuses clear means less gunk spreads to my lungs and lodges there, which in turn means less need for massively expensive antibiotics and even more expensive hospital trips.

Go figure.

Anyway, just as I was stewing away at the arbitrary and exhaustive ban of all medicines relating to sinus congestion, I checked my inbox. It just happened to be full of links and resources relevant to my position here—and yes, it really happened this way, as contrived as the timing may seem.

So, back to my main point here: Information is power. For all of you who feel frustrated, who are nursing your own indignations and outrages, who want to know what’s really going on with your healthcare and what you can do about it, I offer up the following suggestions:

PharmedOut is an independent, publicly funded project whose goal is to empower physicians to recognize and counteract inappropriate pharmaceutical promotion. Last week they released publicly a slideshow called “The Physician-Pharma Relationship." Check out the press release and slideshow here.

Not on the Center for Science in the Public Interest’s e-mail list? Click here to check out the site and sign up to get regular summaries of what’s going on in the world of science and health delivered to your inbox. From disclosing financial conflicts of interest in research studies that affect your life to the latest analysis of FDA policy changes and announcements, the Integrity in Science Watch e-mail is a treasure trove of the kind of information you need to have but can’t always get to easily.

It’s no secret that healthcare is one of the most pressing political issues out there. Election year scrutiny got you thinking? Visit the Partnership To Fight Chronic Disease, a great resource that is a “national coalition of patients, providers, community organizations, business and labor groups and health policy experts, committed to raising awareness of policies and practices that save lives and reduce health costs through more effective prevention and management of chronic disease.”

As for me, I’m planning my next phone call to try and remedy this pill situation. Luckily I’ve got plenty to read while I wait on hold.

Thursday, February 14, 2008

Were it not for the steady stream of slushy rain, the flood watch, and the generally miserable weather last night I wouldn’t have considered a Valentine’s post at all. That’s how cringe-worthy I find the obligatory Valentine’s post. But we’ll return to epics floods and wild winter weather in a moment.

First, a quick update on the great plague of 2008:

I can walk. And talk. At the same time. And, without coughing till I throw up or pop blood vessels across my face that even the hardiest concealer can’t hide. This is progress, people. There’s a long way to go, to be sure, but things are more manageable.

Now, back to winter floods. Last year, February 14 fell on a wretchedly damp, raw, icy day. In fact, our city street flooded and then froze, leaving all the cars encased in a couple feet of ice for several days. I remember this vividly because the walk to the subway was an exercise in survival and cabs were nowhere to be found.

I also remember sitting on the nearly empty train car (apparently everyone else decided dinner out wasn’t worth braving this weather, but we weren’t so faint of heart) with my scarf-ed, glove-ed, wind-whipped reflection staring back at me. I was so engrossed in what I was telling my husband I didn’t notice how quiet he was. I was really excited about new research on improved diagnostic measures for PCD I’d read about earlier that day. It was technology I’d already used at my doctor’s office, but I was pleased to see its efficacy confirmed and hopeful that widespread use of it might mean easier diagnoses for other patients (PCD is notoriously hard to diagnose).

Later, as the various courses of our Valentine’s pres-fixe dinner arrived, I was still animated and excited. He was still quiet. I was oblivious, he was frustrated.

Turns out, Valentine’s Day dinner might not be the best time ever for research chat. (Did I mention the obliviousness?)

It wasn’t that he felt we talked about PCD (or any of the other conditions) too much—day to day, there really isn’t much to say. You cough, you wheeze, and with any luck you breathe okay and manage to avoid catching an infection. There’s not much riveting conversation to be had about it.

And it wasn’t that he felt the new research was scary or depressing—on the contrary, it was full of hope and promise, and intellectually he understood why it was encouraging.

This information was good stuff, right? So where was the problem?

But on a night that’s supposed to be about us, the side of medicine, however positive it was, that accompanied our meal was less than welcome.

On a night that’s supposed to be about us, PCD and all its potential, good and bad (and with progressive diseases, the long term potential for bad is certainly a legitimate issue), was also a reminder that someone he loves is sick and he can’t change that or fix it.

And when you love someone, isn’t your first instinct to take away whatever it is that causes them pain or discomfort? (And would you want a reminder, however benign, that you can’t?)

Message received. Timing is everything.

This year is different. The epics rains ended last night and today is actually sunny. We’re driving to our restaurant this year because our reservation is late and now we have a driveway, meaning we don’t need to take the subway because our car is iced in and we don't want to circle the block till midnight looking for a space.

And I don’t happen to have any new research or facts to share, but if I did, I’d save quoting the statistics and waxing poetic about the methodology for tomorrow.

We won’t need to talk about how I feel, because he will be able to tell by my complexion and my eyes and the way I inhale when I talk exactly how I am feeling and that unspoken understanding is better than any conversation.

Saturday, February 09, 2008

So we had a heated discussion in one of my classes this week about patient confidentiality and gossip. Just this morning, I saw this link about a ban on gossip posted on Paul Levy’s blog, Running a Hospital, and figured the forces were aligning in such a way as to warrant a post.

Specifically, we discussed the types of conversations that take place at nurses’ stations, cafeterias, and outside patient rooms. Everyone was adamant that a certain amount of patient information needs to be shared between shifts and between providers for optimal patient care. But they were worried about the fine line between what is medically necessary information and what is merely gossip, particularly when it is shared within earshot of other patients, families, and visitors. They’re all familiar with the axiom “Don’t take it home” in regards to patient information, but several of them wished there was something more concrete in place to help them navigate that precarious line.

Patient confidentiality certainly raises timely questions, and one without easy answers. For example, if a patient has a roommate, there is no way to avoid some information transfer to that roommate and his or her visitors. But when one patient’s relative has extremely detailed knowledge of the roommate’s lab results, family situation, and legal issues, then confidentiality has been breached.

I can approach their discussion from a different perspective. I can see why healthcare providers would need to know about changes in my physical and emotional states when I am an inpatient, and I want them to know if it means they can better address my needs.

On the other end of the spectrum, I once bumped into a medical assistant from my endocrinologist’s office at a bar. She introduced me to her friends as her patient, asked me if my new dose of medication (which she named) was working, and told them I was a difficult stick for blood draws. (She wasn’t sober, can you tell?) I was not impressed. At all. Obviously this is an egregious example way outside the bounds of the classroom conversation, but yet it’s still part of the conversation.

I know that my colleagues and I face similar boundaries in sharing student information. It’s one thing to describe a classroom situation and seek advice or bounce around ideas about how to handle it, or to very generally describe someone’s extenuating circumstances when in committee meetings to discuss failing grades. It’s another thing altogether to reveal any specific, personal information that has been shared with us, and we need to make the same kinds of distinctions between what will help us best help our students and what should always remain confidential.

I think in any profession where you establish relationships with people, where trust and respect develops and you begin to really care about people, you’re going to confront these issues. If you didn’t care, the details wouldn’t matter.

Friday, February 01, 2008

Okay, so I admit some of the old familiar demons started surfacing last night:

Anxiety that in the midst of many deadlines, I am bedridden with another infection. Or at least couch-ridden, where I balance my laptop on my stomach and type when I am not coughing.

(And yet even as I wonder how I’ll get it all done when I can’t breathe or sit up, I’m composing e-mails in my head, plotting out the next development or venture, a weird inverse relationship between how I am feeling and how much I think I should be able to do.)

Frustration over the fact I will be canceling plans for the weekend, and hesitancy over making more plans in the near future because I’ve had to cancel far more engagements than I’ve made it to lately.

(I’ve been in this cycle so many times. I’ve written about it and even been interviewed on the radio about it. Infection after infection, cancelled plans after cancelled plans, and soon the fear of letting people down and having to say “I’m sorry, but” starts to creep into my thoughts.)

But before the anxiety and the frustration reached full hilt, I came across this post on gratitude at Sick Momma that gave me pause (thanks for the kind words, Aviva!). Instead of thinking about articles on deadline and plans I needed to break, I tried to consider things from a different perspective.

I am grateful for friends who understand when I disappear for weeks or months at a time, who know when I say I am sick there is nothing I can do about it and that it has nothing to do with not wanting to see them, who are as happy to get coffee or drink tea as they are to go out and get drinks, and who always redeem rain-checks.

I am grateful for a rock star of a doctor who e-mails me back right away, and for a wonderful hospital only a few minutes away when I need it most. I’m grateful to live in an area where cutting-edge technology and research is at my disposal.

I am grateful for knowledge. People with PCD who are only a couple of decades older than me grew up with so much more mystery. It may have taken awhile, but at least I now know what’s wrong, what to expect, and how to prevent further damage.

I am grateful for the community of writers, experts, mentors and other professionals I am privileged to know, people whose wisdom and passion inspire me.

I am grateful to be building a career where even if it means looking at the computer screen over the top of a nebulizer mouthpiece or typing when I’m in a prone position because I’m just not getting oxygen, I can still get work done and still do something I am passionate about. I am also grateful for my students, who are thoughtful and committed, and who teach me a lot about healthcare.

I am grateful for a supportive family who brings me soy lattes and chicken soup and instinctively waits by the phone in case a “hospital call” comes their way. I am especially grateful for a husband who anticipates my needs better than I do, who can tell by the tone of my voice how much air I am moving, and who brings the world to my doorstep when he knows I’m feeling isolated by illness.